Mental Health Problems in People With Learning Disabilities Assessment of Mental Health Problems in People With Learning Disabilities

Assessment of mental health problems in people
with learning disabilities
NICE Pathways bring together everything NICE says on a topic in an interactive

flowchart. NICE Pathways are interactive and designed to be used online.
They are updated regularly as new NICE guidance is published. To view the latest
version of this NICE Pathway see:
http://pathways.nice.org.uk/pathways/mental-health-problems-in-people-with-
learning-disabilities
NICE Pathway last updated: 31 March 2021
This document contains a single flowchart and uses numbering to link the boxes to the
associated recommendations.
Mental health problems in people with learning disabilities Page 1 of 12

© NICE 2021. All rights reserved. Subject to Notice of rights.
Assessment of mental health problems in people with learning disabilities NICE Pathways

1 Person with learning disabilities being assessed for a possible mental

health problem
No additional information
2 Prepare for assessment
A professional with expertise in mental health problems in people with learning disabilities [See
page 10] should coordinate the mental health assessment, and conduct it with:
the person with the mental health problem, in a place familiar to them if possible, and help
them to prepare for it if needed
the family members, carers, care workers and others that the person wants involved in their
assessment
other professionals (if needed) who are competent in using a range of assessment tools
and methods with people with learning disabilities and mental health problems.
Speak to the person on their own to find out if they have any concerns (including safeguarding
concerns) that they don't want to talk about in front of their family members, carers or care
workers.
Before mental health assessments:
agree a clear objective, and explain it to the person, their family members, carers or care
workers (as appropriate), and all professionals involved
explain the nature and duration of the assessment to everyone involved
explain the need to ask certain sensitive questions
address any queries or concerns that the person may have about the assessment process.
Quality standards
The following quality statement is relevant to this part of the interactive flowchart.
2. Assessment by a professional with relevant expertise
3 Initial assessment during a crisis
Conduct an initial assessment for people who are experiencing a mental health crisis, which

should:
include an assessment of the person's mental health

include a risk assessment
include identification of interventions to:
help address the problem that caused the crisis
minimise any associated risks
bring stability to the individual and their immediate environment
produce a crisis plan that sets out (using the least restrictive options possible) how to
reduce the likelihood of further crises, and what to do if the person has another crisis.
4 Assessment
When conducting mental health assessments, be aware:
that an underlying physical health condition may be causing the problem

that a physical health condition, sensory or cognitive impairment may mask an underlying
mental health problem
that mental health problems can present differently in people with more severe learning
disabilities [See page 9]
When conducting mental health assessments, take into account the person's:
level of distress
understanding of the problem
living arrangements and settings where they receive care
strengths and needs.
During mental health assessments:
establish specific areas of need to focus on

assess all potential psychopathology, and not just the symptoms and signs that the person
and their family members, carers or care workers first report
describe the nature, duration and severity of the presenting mental health problem
take into account the person's cultural, ethnic and religious background
review psychiatric and medical history, past treatments and response
review physical health problems and any current medication, and refer to other specialists
for review if needed

review the nature and degree of the learning disabilities [See page 10], and if relevant the
person's developmental history
assess for problems that may be associated with particular behavioural phenotypes (for
example, anxiety in people with autism and psychosis in people with Prader–Willi
syndrome), so that they can be treated
assess the person's family and social circumstances and environment, and recent life
events
assess the level of drug or alcohol use as a potential problem in itself and as a factor
contributing to other mental health problems (see also the NICE Pathways on alcohol-use
disorders, drug misuse prevention, drug misuse management in over 16s and coexisting
severe mental illness and substance misuse: community health and social care services.)
establish or review a diagnosis using:
a classification system such as DSM-5 or ICD-10, or those adapted for learning
disabilities (for example the Diagnostic Manual – Intellectual Disability [DM-ID] or
Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning
Disabilities/Mental Retardation [DC-LD]) or
problem specification
assess whether a risk assessment is needed (see risk assessment [See page 6]).
Assess recent changes in behaviour using information from family members, carers, staff or
others involved in the assessment as well as information from relevant records and previous
assessments. Take into account the nature, quality and length of their relationship with the
person.
Use the results of the mental health assessment to develop a written statement (formulation) of
the mental health problem, which should form the basis of the care plan (see care plan) and
cover:
an understanding of the nature of the problem and its development

precipitating and maintaining factors
any protective factors
the potential benefits, side effects and harms of any interventions
the potential difficulties with delivering interventions
the adjustments needed to deliver interventions
the impact of the mental health problem and associated risk factors on providing care and
treatment.

5 Assessment tools
During any mental health assessment:
consider using tools that have been developed or adapted for people with learning
disabilities [See page 10] and
take cost into account if more than one suitable tool is available.
If using tools that have not been developed or adapted for people with learning disabilities, take
this into account when interpreting the results.
When conducting an assessment with a child or young person with learning disabilities,
consider using tools such as the Developmental Behavior Checklist – parent version (DBC-P) or
the Strengths and Difficulties Questionnaire (SDQ).
When assessing depressive symptoms in an adult with learning disabilities, consider using a
formal measure of depression to monitor change over time, such as the Glasgow Depression
Scale (the self-report for people with milder learning disabilities [See page 9] or the carer
supplement for people with any degree of learning disabilities).
See also the NICE Pathway on depression.
Consider supplementing an assessment of dementia with an adult with learning disabilities with:
measures of symptoms, such as the Dementia Questionnaire for People with Learning
Disabilities (DLD), the Down Syndrome Dementia Scale (DSDS) or the Dementia Screening
Questionnaire for Individuals with Intellectual Disabilities (DSQIID)
measures of cognitive function to monitor changes over time, such as the Test for Severe
Impairment (TSI)
measures of adaptive function to monitor changes over time.
Complete a baseline assessment of adaptive behaviour with all adults with Down's syndrome.
See also the NICE Pathway on dementia.
6 Risk assessment
When conducting risk assessments with people with learning disabilities [See page 10] and
mental health problems, assess:

risk to self
risk to others (including sexual offending)
risk of self-neglect
vulnerability to exploitation
likelihood and severity of any particular risk
potential triggers, causal or maintaining factors
whether safeguarding protocols should be implemented.
If indicated by the risk assessment, develop a risk management plan with the person and their
family members, carers or care workers (as appropriate).
Risk management plans should:
set out individual, social or environmental interventions to reduce risk

be communicated to family members, carers or care workers (as appropriate) and all
relevant staff and agencies.
Risk assessments and resulting risk management plans should be reviewed regularly and
adjusted if risk levels change.
7 Follow-up
Provide the person, their family members, carers or care workers (as appropriate), and all
relevant professionals with a summary of the assessment:
in an agreed format and language

that sets out the implications for care and treatment.
Give the person and their family members, carers or care workers (as appropriate) another
chance to discuss the assessment after it has finished, for example at a follow-up appointment.
Further assessment
Consider conducting a further assessment that covers any areas not explored by the initial
assessment, if:
new information emerges about the person's mental health problem or

there are significant differences between the views of the person and the views of their
family members, carers, care workers or staff about the problems that the assessment has

focused on.
8 Care plan
See Mental health problems in people with learning disabilities / Mental health problems in
people with learning disabilities overview / Care plan

Learning disabilities are commonly divided into 'mild', 'moderate', 'severe' and 'profound', but
these categories are based on IQ and most UK health and social care services do not measure
this. Therefore, this guideline uses the terms 'milder learning disabilities' (approximating to mild
and moderate learning disabilities) and 'more severe learning disabilities' (approximating to
severe and profound learning disabilities).
All people with learning disabilities:
need additional support at school

need support in some areas of adult life, such as budgeting, planning, time management,
and understanding complex information
need more time to learn new skills than people who don't have learning disabilities.
People with milder learning disabilities:
may be able to live independently and care for themselves, managing everyday tasks and
working in paid employment
can communicate their needs and wishes
may have some language skills
may have needs that are not clear to people who do not know them well.
and moderate learning disabilities, that are often defined as an IQ of 35 to 69 and impairment of
adaptive functioning with onset in childhood) and 'more severe learning disabilities'
(approximating to severe and profound learning disabilities, that are often defined as an IQ of 34
or below with impairment of adaptive functioning and onset in childhood).

People with more severe learning disabilities are more likely to:
need support with daily activities such as dressing, washing, food preparation, and safety

have limited or no verbal communication skills or understanding of others

need support with mobility
have complex health needs and sensory impairments.
and moderate learning disabilities) and 'more severe learning disabilities' (approximating to
severe and profound learning disabilities).

Glossary
Carer
(a person who provides unpaid support to someone who is ill, having trouble coping or has
disabilities; this does not include care workers (paid carers), who are included in the definition of
staff)
Carers
(people who provide unpaid support to someone who is ill, having trouble coping or has
disabilities; this does not include care workers (paid carers), who are included in the definition of
staff)
Care workers
(people who provide paid support to someone who is ill, having trouble coping or has disabilities
in a variety of settings (including residential homes, supported living settings and day services))
Staff
(healthcare professionals and social care practitioners, including those working in community

teams for adults, children or young people (such as psychologists, psychiatrists, social workers,
speech and language therapists, nurses, behavioural analysts, occupational therapists,
physiotherapists and pharmacists); and educational staff)
Sources
Mental health problems in people with learning disabilities: prevention, assessment and
management (2016) NICE guideline NG54
Your responsibility
Guidelines
The recommendations in this guideline represent the view of NICE, arrived at after careful
consideration of the evidence available. When exercising their judgement, professionals and
practitioners are expected to take this guideline fully into account, alongside the individual
needs, preferences and values of their patients or the people using their service. It is not
mandatory to apply the recommendations, and the guideline does not override the responsibility
to make decisions appropriate to the circumstances of the individual, in consultation with them
and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline
to be applied when individual professionals and people using services wish to use it. They
should do so in the context of local and national priorities for funding and developing services,
and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to
advance equality of opportunity and to reduce health inequalities. Nothing in this guideline
should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable

health and care system and should assess and reduce the environmental impact of
implementing NICE recommendations wherever possible.
Technology appraisals
The recommendations in this interactive flowchart represent the view of NICE, arrived at after

careful consideration of the evidence available. When exercising their judgement, health
professionals are expected to take these recommendations fully into account, alongside the
individual needs, preferences and values of their patients. The application of the
recommendations in this interactive flowchart is at the discretion of health professionals and
their individual patients and do not override the responsibility of healthcare professionals to
make decisions appropriate to the circumstances of the individual patient, in consultation with
the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable
the recommendations to be applied when individual health professionals and their patients wish
to use it, in accordance with the NHS Constitution. They should do so in light of their duties to
have due regard to the need to eliminate unlawful discrimination, to advance equality of
opportunity and to reduce health inequalities.

Medical technologies guidance, diagnostics guidance and interventional procedures

guidance
The recommendations in this interactive flowchart represent the view of NICE, arrived at after
careful consideration of the evidence available. When exercising their judgement, healthcare
professionals are expected to take these recommendations fully into account. However, the
interactive flowchart does not override the individual responsibility of healthcare professionals to
make decisions appropriate to the circumstances of the individual patient, in consultation with
the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in

their local context, in light of their duties to have due regard to the need to eliminate unlawful
discrimination, advance equality of opportunity, and foster good relations. Nothing in this
interactive flowchart should be interpreted in a way that would be inconsistent with compliance
with those duties.



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Assessment of mental health problems in people

with learning disabilities

NICE Pathways bring together everything NICE says on a topic in an interactive

Mental health problems in people with learning disabilities Page 1 of 12

Mental health problems in people with learning disabilities Page 2 of 12

1 Person with learning disabilities being assessed for a possible mental

2 Prepare for assessment

Before mental health assessments:

2. Assessment by a professional with relevant expertise

3 Initial assessment during a crisis

Mental health problems in people with learning disabilities Page 3 of 12

include an assessment of the person's mental health

When conducting mental health assessments, be aware:

that an underlying physical health condition may be causing the problem

During mental health assessments:

establish specific areas of need to focus on

Mental health problems in people with learning disabilities Page 4 of 12

an understanding of the nature of the problem and its development

Mental health problems in people with learning disabilities Page 5 of 12

During any mental health assessment:

See also the NICE Pathway on depression.

See also the NICE Pathway on dementia.

Mental health problems in people with learning disabilities Page 6 of 12

Risk management plans should:

set out individual, social or environmental interventions to reduce risk

in an agreed format and language

new information emerges about the person's mental health problem or

Mental health problems in people with learning disabilities Page 7 of 12

Mental health problems in people with learning disabilities Page 8 of 12

All people with learning disabilities:

need additional support at school

People with milder learning disabilities:

All people with learning disabilities:

need additional support at school

Mental health problems in people with learning disabilities Page 9 of 12

have limited or no verbal communication skills or understanding of others

All people with learning disabilities:

need additional support at school

Mental health problems in people with learning disabilities Page 10 of 12

Commissioners and providers have a responsibility to promote an environmentally sustainable

Mental health problems in people with learning disabilities Page 11 of 12

Commissioners and providers have a responsibility to promote an environmentally sustainable

Medical technologies guidance, diagnostics guidance and interventional procedures

Commissioners and/or providers have a responsibility to implement the recommendations, in

Commissioners and providers have a responsibility to promote an environmentally sustainable

Mental health problems in people with learning disabilities Page 12 of 12

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